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Adam Long: The Fighter

Five times, Adam Long has heard the words “it’s cancer.” Five times—with the help of St. Jude—he has chosen to fight.

Face beaded with perspiration, Adam Long shuts his eyes in fierce concentration and hoists a massive stack of metal plates to its highest position. As the weights descend with a restrained clunk, Adam exhales, pulls out his earphones and smiles.

“Years ago, they told me I wouldn’t be able to lift heavy weights,” he says. “I decided to prove them all wrong.”

The clank of iron plates, the scent of dried sweat, the rhythmic exhalations fill Adam with a sense of accomplishment, a feeling of control. “I’m a fighter,” he explains. Indeed, for 13 years, Adam has been locked in a battle for his life. St. Jude Children’s Research Hospital has helped him shoulder that load.

The battle begins

Adam’s core of resilience was forged in the second grade, when he lost his 29-year-old mother to breast cancer.

“My mom was strong; she didn’t show weakness or fear. She knew she probably wouldn’t be here to see me grow up, so she tried to teach me everything she could,” Adam recalls. “After she passed away, my dad went through a bad time. I had to be his rock and help take care of my little brother, so I dropped all the little-kid stuff.

“I was grown up at 7.”

Three years later, Adam hurt his left arm in a bicycle wreck. When the pain persisted, his grandmother took him to the hospital. The subsequent cancer diagnosis hit Adam like a punch to the gut. Unlike most 10-year-olds, he understood all too well what was at stake.

“Everything was surreal,” he says. “I kind of broke down, and then I changed totally. It was a fight-or flight type of response. Instead of being down about it, I thought, ‘I might as well start fighting immediately. I can’t leave my family, because they depend on me.’”

When he arrived at St. Jude, Adam learned that he had a bone tumor called osteosarcoma. Several months of chemotherapy treatments were followed by limb-sparing surgery to replace his entire left humerus and shoulder.

Fight or flight

For the next 10 years, Adam pursued an active lifestyle, excelling in academics and graduating from high school. The teenager led worship services and served as a counselor at church camp; he learned to play the guitar and began working as a personal trainer. He also fell head-over-heels for a girl named Rachel.

Adam exercised constantly, running six miles a day, leg pressing up to 1,200 pounds and bench pressing more than 200. “I was very vain back then,” he admits. “I thought I couldn’t be touched because I was so strong. It was crazy to think that cancer would happen again.”

In the summer of 2009, Adam was executing an overhead lateral pullover when he heard the bone crack in his right arm. Immediately, he assumed that he had placed too much stress on his arm and had incurred a hairline fracture. “They’ll put it in a cast, and I’ll get back to training as soon as I get out of the cast,” he thought. But X-rays indicated a bone lesion. He had a separate, unrelated case of osteosarcoma.

“I wasn’t ready to go through it again,” Adam admits. “But at the same time, I had faith that I was going to get through it. I thought, ‘God’s not going to bring me through it once to have me fail a second time.’

“Once again, I went into that fight-or-flight mode. I said, ‘Well, let’s go. Let’s kill it. Let’s get it over with.’”

In the genes

Back in 1999, Adam’s St. Jude oncologist, Sheri Spunt, MD, had tested Adam to determine whether he had a mutation of the p53 gene. Individuals with that genetic defect are at high risk of osteosarcoma as well as breast cancer. At that time, the results were negative. Ten years later, Spunt was determined to get to the bottom of the mystery.

“There has to be some underlying genetic reason why this kid has had two separate cancers and why his mom died at an early age of breast cancer,” she said. Fortunately, genetic testing had advanced during the preceding decade. This time, the test indicated that Adam had the p53 mutation.

“It doesn’t affect his treatment or his outcome—patients who have the mutation fare the same as patients who do not have the mutation,” Spunt explains. “But it means that Adam’s personally at risk for developing other cancers as he gets older. It also has potential implications for other members of his family who may have inherited the gene but may not have manifested the condition yet.”

Adam met with the hospital’s genetic counselor so that he could better understand his risks as well as those to his brother. He also received chemotherapy and underwent a second limb-sparing operation, this time on his right arm.

“OK, I’m done,” he told himself.

A lesson in perspective

About a year later, he and Rachel were riding a Jet Ski when he tumbled into the water, injuring the upper part of his right arm. “I’m sure it’s a torn muscle,” Adam assured his girlfriend.

But the knot was a tumor. Adam underwent a third operation and intensive radiation treatments. All seemed well for about nine months. Then a CAT scan indicated spots on Adam’s right lung. Surgeons removed those lesions, later discovering new ones in the left lung. Adam underwent his fifth surgery in the summer of 2011.

Then Spunt enrolled Adam in a new clinical trial designed specifically for patients at least 15 years of age, whose osteosarcoma has spread to the lung but whose lung nodules have been surgically removed. Neither Spunt nor Adam knew whether he would receive the investigational drug or the placebo.

“I hope the information they learn from me will help other kids,” Adam says. “It’s tough to deal with cancer over and over again. I wouldn’t want anyone else to have to go through it, especially young kids.”

“That’s a typical example of Adam’s selflessness,” Spunt says. “He was willing to participate in the study because he knew it would help other people even if it didn’t help him.”

“Adam has given me great perspective,” she says. “You may have issues in your life that you think are a big deal. But all you have to do is look at Adam and see everything that he has overcome—and know that if he can do it, then you can overcome your issues, too.”

Adam credits his medical team for helping him cope with the challenges he has encountered in the past 13 years. “Dr. Spunt is among the greatest people that I’ve ever met,” he says. “She and nurse JoAnn have pulled me through so much, and they’ve given me hope time after time.”

Keep fighting

Adam admits that his experiences have had a profound influence on his attitude.

“To be told over and over again that I have cancer has torn me down and built me up at the same time,” he explains. “When I got cancer the second time, it totally took apart the person that I was and made me a different person. I’m a lot stronger now, which I didn’t think was possible. I see things differently: I’m thankful; I pay attention to detail; I stop to listen. I see people a lot differently, as well. I work in a bookstore, where I get to talk to people every day. I feel like I can touch them without even telling them what I’ve been through.”

Recently, a bookstore customer confided to Adam that her son had osteosarcoma. When Adam asked about the boy’s treatment, the woman noticed the scars on his arms and realized that he was a cancer survivor.

“My attitude was, ‘Hey, your son can get through it; see these scars? The scars don’t matter. No matter what, you’ve just got to keep fighting and don’t give up,’” Adam says.

During a checkup a few months ago, Adam gave his doctor a scare. He had lost 10 pounds since his previous visit. Spunt’s heart sank.

“I thought, ‘Oh, no—maybe this drug is having a bad side effect,’” she recalls. “But when I walked into the examination room, Adam was grinning from ear to ear. He told me he was training for the St. Jude Memphis Marathon and had been running a lot of miles. That’s why the weight was coming off.”

Adam laughs at the memory. “Yeah, I’ve had two lung surgeries, so I figured it would be a good goal to do the full marathon in 2013.

“I’ve got a lot of training to do.”

Editor’s note: Just before press time, Adam learned that he has developed yet another cancer, this time a brain tumor.